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EDS Genetic Counsellor

Sheffield Children's NHS Foundation Trust
£43,742 to £50,056 per annum pro rata
Closing date
22 Jul 2024

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Due to maternity, a 0.8 WTE genetic counsellor post has become available within the Ehlers Danlos Syndrome (EDS) Diagnostic Service, based within Sheffield Clinical Genetics Service.

We are seeking an enthusiastic, well organised genetic counsellor to join our well-established EDS team based with the Sheffield Clinical Genetics Department at the Northern General Hospital site in Sheffield.

The post holder will work as part of the Sheffield EDS service which provides specialist testing and diagnostic work-up for patients with a possible diagnosis of EDS. As well as providing support and management advice to patients following a diagnosis of vascular, classical and other rarer types of EDS. This role supports the clinical and genetic counselling needs of this patient group.

We welcome applicants with current GCRB or HCPC registration. Consideration may be given to appointing at band 6 for suitably qualified candidates with a view to progression to band 7 once GCRB registration has been achieved.

Main duties of the job

The post holder will work alongside clinical colleagues to provide the Sheffield base of the national NCG Ehlers Danlos Syndrome (EDS) Service.

This service provides specialist testing and diagnostic work-up for patients with a possible diagnosis of EDS where all previous standard investigations have proved inconclusive. This role will act to support the clinical and genetic counselling needs of this patient group.

The post holder will also work as part of a multi-disciplinary team approach to providing a high-quality genetic counselling service at regional specialist level for a population of 1.8 million in the South Yorkshire Region.

The aim of genetic counselling is to help individuals and families deal with genetic disorders. By working closely with medical colleagues to deliver a package of care appropriate to the individual's needs, families are empowered to make informed choices.

The genetic counsellor manages an individual caseload which will involve seeing families in consultant-led clinics, counsellor-led clinics and occasionally in families own homes

It is essential that post-holders at this level have attained, or to be working towards attaining genetic counsellor registration, which is assessed at master's level.

About us

At Sheffield Children's, our purpose is clear: to provide healthier futures for children and young people. Our three strategic aims are:

1. Outstanding Patient Care

2. Brilliant Place to work

3. Leaders in Children's Health

We work successfully with local, regional, and national partners to provide physical and mental healthcare across acute and community settings. Many of our clinicians are amongst the best in their field, recognised nationally and internationally for their expertise.

As well as having enormous pride in what we do, we are a friendly, welcoming, and motivated NHS Trust who are guided by our CARE values: Compassion, Accountability, Respect, and Excellence. Our nearly 4000 colleagues live these values, ensuring kind and compassionate care that makes patients and their families feel safe and at home.

As we approach our 150th anniversary in 2026, we remain committed to enhancing our reputation in children's health leadership, improving the experiences of both patient and colleagues, and focusing on our communities and population health

Job description

Job responsibilities

Communication with patients and families.
  • Elicit patients concerns and expectations.
  • Elicit and accurately document patients detailed family history.
  • Work with the patient and family to define their own agenda.
  • Interpret medical, family, and psychological history.
  • Communicate genetic information to patients and their relatives.
  • Receive and provide highly complex and possibly conflicting information.
  • Identify and respond to emerging issues for the patient or family.
  • Communicate and apply new scientific information for the benefit of the family over an open-ended time frame.
  • Ensure patients and families have all the information available to provide.
  • informed consent for genetic tests and/or photography.
  • Interpret and communicate normal and abnormal genetic test results to patients and health care professionals.
  • Participate in co-counselling sessions with medical and genetic counselling.
  • colleagues when appropriate.
  • Expertly communicate highly sensitive and potentially psychological damaging information, which may cause high levels of distress e.g:

Giving a couple an abnormal prenatal result.

Giving a Vascular EDS result
  • Communicate with patients who are bereaved and provide support e.g. around termination of pregnancy.
  • Use non-directive and other counselling skills to counsel patients about various testing options to facilitate decision making.
  • Identify and manage conflict within families created by sensitive genetic information.
  • Manage conflict when patients demands are incompatible with professional responsibilities and resources.
  • Work with patients who have great difficulty accepting a clinical diagnosis or a genetic test result.
  • Use appropriate advanced counselling skills to communicate sensitively in the presence of language, cultural and/or medical issues e.g.

In the presence of a complex ethical, cultural or psychiatric issue

When there is a need for an interpreter or when patients have learning difficulties or psychiatric illness.

Communicate up to date appropriate information on risk reducing factors. (i.e high dose folic acid) or risk influencing factors (i.e HRT, contraceptive pill).

Prepare letters to patients summarising discussions and giving results.

Develop and utilise patient information leaflets

Communication with other professionals and support agencies to facilitate comprehensive care, management and support.
  • Liaise with laboratory colleagues to order and communicate about genetic tests and to discuss complex test results that are difficult to interpret.
  • Liaise with relevant obstetric colleagues in arranging a termination of pregnancy following an abnormal prenatal result.
  • Liaise regionally nationally and internationally with other relevant departments i.e histology, surgery, screening, fetal medicine, midwifery, psychiatry, cardiology to obtain and provide information with appropriate patient consent.
  • Liaise with colleagues in other genetic centres to obtain and provide information with appropriate patient consent.
  • Prepare letters to referring clinicians as agreed with medical colleagues.
  • Liaise and defer to medical colleagues about issues that have diagnostic or clinical complexity.
  • Discuss cases with ethical complexity with colleagues where appropriate.
  • Discuss and liaise over all clinical issues relating to the EDS service with other members of the team.
  • Liaise with clinical and administrative colleagues both in Sheffield and London to ensure the EDS service in both centres run to similar standards.
  • Liaise with, and act as a contact for, other individuals involved in a patients care, including schools.

Provision of a comprehensive patient/client care package
  • Confirm diagnostic information.

Calculate risks of patients and families being affected by various genetic disorders, the risk of recurrence and the carrier risks.

Assess patients to determine where there is a need for referral to specialist therapeutic counselling, psychiatric assessment or screening and make appropriate referrals.


Provide support for the EDS Consultant undertaking skin biopsies.

Ensure that all necessary biopsy equipment is available for the clinic.

Ensure that all written information i.e. consent forms & patient information leaflets are available for use when skin biopsies are to be undertaken.

Order genetic and biochemical tests as clinically appropriate after discussion with medical and laboratory colleagues.

Provide information to, and advise on, how identified at-risk relatives can obtain genetic counselling and/or screening.

Arrange for families to have blood samples taken outside of the Trust and be transported to the appropriate laboratory.

Inclusive Recruitment & Selection

We offer encouragement and active support to applicants with additional needs, including those from ethnic minorities, with disabilities and members of the LGBTQ+ community. If you wish to adjust any aspect of the recruitment process or wish to find out more about our recruitment & selection processes, please get in touch with our Recruitment

We are currently reviewing our recruitment & selection process and are looking to make our job adverts more inclusive. This will support the long-term aim of Sheffield Childrens being a champion of Equality, Diversity and Inclusion. If you have any ideas in how we can make our recruitment & selection process more inclusive, please get in touch with Catherine Gilbert

Trust Values

The Trust is committed to providing great quality patient care and keep children, young people and families at the heart of what we do by following our CARE values:

Compassion leading by kindness and showing empathy, understanding and respect

Accountability striving to do the right thing and owning responsibility

Respect value differences, tackling inequality and fostering a culture of inclusion

Excellence delivering a high-quality standard of care

Person Specification



  • Master of Science Degree in Genetic Counselling
  • Recognised MSc. in Genetic Counselling.
  • Registration as a Specialist Registered Genetic Counsellor (AGNC)
  • Basic Counselling training of at least 120 hours guided learning hours


  • Adult teaching qualification
  • Evidence of management training
  • Higher post-graduate degree
  • Appraisal training



  • Basic Counselling training of at least 120 hours guided learning hours
  • Experience of working with the psychosocial and ethical impacts of human genetics
  • Experience of working with people who are distressed


  • Experience in child and family health management
  • Experience in cancer service delivery
  • Experience of the needs of those with disability
  • Experience of working in the community

Knowledge & Skills


  • A good working knowledge of human genetics obtained through graduate / post-graduate courses or equivalent experiential learning
  • A good working knowledge of cancer genetics obtained through graduate / post-graduate courses or equivalent experiential learning
  • Proven counselling skills and a willingness to work within clinical and counselling supervision
  • Ability to work autonomously and manage a defined caseload
  • Ability to manage individual needs within a family context
  • Phlebotomy


  • Knowledge and experience of financial and resource management issues
  • Ability to design, evaluate and undertake research

Employer details

Employer name

Sheffield Children's NHS Foundation Trust



Herries Road


S5 7AU

Any attachments will be accessible after you click to apply.


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